Don't say call the Ghost Busters 😂 either.
Is a professional consultants words in verbal or written the final professional conclusion ? with all the key factors to your condition.
Can a experts professional opinion be nit picked by others when they have over 25 years experience in there field
How on earth can you perform yoga or fitness groups etc when your in servere pain ?
Any answers please would be most grateful
Kindest Regards
Sadly it is something that happens too often. Self /pain management techniques can help to manage the pain
I use pacing, exercise /activity, heat, mindfulness, meditation, holistic therapies, weighted blankets, cbd, supplements, homeopathic remedy, distraction etc
I've also had cbt and counselling which has helped for I think about my pain.
Have you been offered a pain management programme - they can help you learn ways to manage and live with chronic pain
Hello HazelHad 3 pain management consultations (private hospital) & have now been told there is nothing more can be done 😞 for me.
Have trialled all SSRIs & prescription medication but they only take away about 10% of the pain.
As for CBT I have been told I have to wait 12 to 14 months 😞 to be seen,as thousands of people are on the waiting lists.
I have the following
Historic Fibromyalgia stage 4
Historic prostitus.
Historic chronic pelvic floor nerve pain syndrome.
Degenerative spine disc decease at L4 L5 S1.
Cervical spine decease at c3 C4 C5 C6
IBS.
Tmj.
Ibd.
E.d. embarrassing 😞
183 out of 200 positive f.i.t.
Quite a shopping 🛒 list one might say
Feel washed up & washed out.
Don't drink & don't do exotic drugs either.
Yeah, often people find that meds only take the edge alternative to bhsoff - for me I'm lucky that they reduce pain enough to allow me to use my other non-med pain management
Waiting lists for cbt etc are horrendous - I use a local charity when I need to, as they only ask for a donation so are an affordable alternative to nhs
How does CBD effect you please ?Inwhich shape or form of medication does it come in ?
To be open & honest all this pain is driving me to so called distraction of not a good kind at all.
I know life goes on but living with it is terrible to say the least
Kindest Regards
Sorry to be ignorant, but what is Historic Fibromyalgia stage 4 ? I've only ever heard of Fibromyalgia and was diagnosed by my GP . I asked to see a rheumatologist but was told that I don't need to because a GP can diagnose it.
yes I wondered what ‘stage 4 fibro’ was. I was diagnosed by a rheumatologist after having everything else ruled out, he did the pressure point test, what I believe might be a bit old fashioned now, started at my feet and nearly jumped off the examination table in agony before he got much further than my knees!
sorry to hear you are having such problems and pain.
I can’t get on with the prescribed medications so like you I pace myself and try exercise daily and mindfulness along with breathing exercises.
Like the other lady who has asked , what is Historic Fibromyalgia stage 4 ?
Hope like here the sun is shining for you today .
Don't listen to what they say. What they really mean is that there is nothing more that they can do for you. But you are your own person. There is a world of knowledge and the answers are there. We just have to find them.
I've been off prescription pills since 2022. And I'm making my GP flex their grey matter.
I think Hazels reply is very helpful, we just keep trying too find ways too deal with this horrid condition ☹️on a daily basis .I find I’m having 2/3 half decent days then some crappy ones follow and I get slowed up until it passes over Very frustrating for many, I do find warmer days better, and differently couldn’t do without the pacing method.
I understand; but I have given up on doctors. Nowadays I have taken my care into my own hands and get otc Ibuprofen. I don't take anything else, and it works for me. GPs where I currently live are a joke. Signed up with them 4 years ago and not managed to extract an appointment yet!
Cheers, Midori
I have an excellent GP practice [if working properly], except for one member, the diabetes "expert" for the whole practice, so I see another GP same practice, about my diabetes, explain throughly my situation, he/she usually agrees with me, but my "expert" prescribes me more 'medications' usually statins🙄, I ring up the agreed pharmacy, inform that I won't be taking them, they can use them for someone else! My "expert" was my ex-GP who through his continual prescribing of pain killers/beta blockers to me, I formed HPT [high pain threshold] now my pain system as they say is 'up the left'🙄, they don't work at all on me!
That's unfortunate. Sounds to me as if that GP needs his fitness to practice investigated.
Cheers, Midori
Thanks Midori that particular GP is the 'treat' effect not cause doctor's, then the patients get addicted to the pain killers, I'm afraid quite common 🙄😤
All I can offer Fibroguy, is that better sleep helps and that my sleep actually is improving because of taking quercetin at night as well as Bach Remedy Rescue Night spray. That also helps me. I'm having marginally longer sleep even though my elderly moggy wakes me up. The improvement has given me hope and that is what I needed. A supplement worth googling maybe but I acknowledge that everyone is so different.
I know I am lucky though because I could not cope had I been diagnosed when still working. Since signing on here I've learnt so much about the complexities that accompany this mean and very varied condition. There was massive pain over a long period which did diminish finally and I feel I was very lucky because of having a great chiropractor, acupuncturist and a lady doctor who listened and is tactful and taught me about fodmaps which has surely helped with all the other dietary abnormalities I have. These did support me unlike some of the NHS docs I read about here. Over time, these have made a great difference and to the depression for which I sometimes also take a 'short' course of Rhodiola Rosea off my own bat when it starts to get into a misery that hangs on and the odd painkillers.
I don't do ghost busters either, but addressing the intuitive side of my life by talking to what I call 'Spirit' (I also qualified to do Reiki) gave and still gives me a new perspective sometimes. Feedback and focussing on breathing also takes some things down a level. I been surprised how 'help' from 'other' has sometimes materialised and I don't care so much anymore if I come over as batty as hell. Also the kindness I read on this website I find is heart and soul warming and makes me trust humanity a little more. If this is mindfulness, I recommend it but it's not for everyone maybe because it has to suit our mindset. - So, meanwhile, just little old me here hopes things improve for you soon.
I was not aware of the 4 stages of fibromyalgia concept but googled it and found this link acrabstracts.org/abstract/t...
You ask about doing exercise, even when in severe pain. Exercise does help people living with fibromyalgia but for many of us, fibromyalgia has resulted in us becoming inactive over time. In terms of lifestyle changes, many of us with chronic long-term persistent pain understandably tend to withdraw gradually from ordinary day-to-day life. It happens slowly, almost imperceptibly, not visiting a friend quite so often, using the phone or going online to do some shopping instead of going out, watching a bit more TV and not going out for a walk as often. After a few years, big changes have gradually taken place, including weight gain.
You can't just suddenly start doing lots of exercise and if you try, you'll soon have to stop. Exercise regimes for people living with fibromyalgia start gently. For example chair based exercises are a suitable starting point for some people. You'll find a selection here on the NHS website nhs.uk/live-well/exercise/s...
From there you might move on to other exercises. You'll find a selection here https:/assets.nhs.uk/prod/documents/NHS-balance-exercise.pdf
BUPA produce a selection of morning stretching exercises which could be the next set to try. bupa.co.uk/newsroom/ourview...
Over time, you should find that doing exercise does not make your fibromyalgia pain any worse, and that you can do more day to day activity. If you combine this with a pain management programme, that's a recipe for living more and suffering a little less.
I started from the premise that I would have to find ways of dealing with fibro naturally, as I did not want to take any of the doc’s suggested drugs, so I have found ways to treat this condition naturally that are for me at least very effective.
remove all chemicals in food, house, anything you put on your skin breath in etc
cut out sugar in all its forms, carbs, alcohol, cakes, biscuits, chocolate etc
cut out all wheat based foods
eat lots of organic veg, fruit, and some protein, organic chicken, fish, lean meat.
I take a lot of supplements split into groups,—for pain, cognition, energy, immune system
Regularly breath pure oxygen under pressure in a hyperbaric chamber, ( it helped cured my brain fog and fatigue)
regular exercise, walking and gym. ( you have to start so slowly and gently it feels as though you have done nothing, the key is consistency, two steps become three etc)
Chinese herbs and accupuncture regularly every month.
Physio every week
my main surmise was that until I stopped putting food in my body that it was intolerant of, and caused inflammation, nothing was going to change, and the oxygen gave me clarity of thought and energy (although it took a while)
I can expand on all this if you are interested, (supplements etc)
hope this is of some use
Hyperbaric chamber where does one find this treatment in the UK without having bags and bags of money ?I know in the USA they have this and it is sponsored by NASA and it's code name is called The Breathe Of God.
MS societies are the normal place people find them. They tend to be a donation or reasonable price to see if they work for you.
Hi DrsDon't have M.S. thank goodness,don't want to add this one to my medical list etc.
Thankyou for your kind reply
they are available to people with other conditions and some with fibro have reported that hyperbaric oxygen therapy has helped them It has some research that supports it from Israel from a number of years ago IIRC.
there are around 68 hyperbaric chambers in M.S charity run centres around the UK, you can join the charity for around £20, and after that it costs around £15-20 per session. oxygen can be used to treat a number of problems, including Fibro, there are studies by ben gurion university in tel aviv which you can look up in the internet, which is why I first went along. I went for many sessions in the beginning, and have been going regularly now once a week for about 10 years, as I find it extremely beneficial for general health as well as fatigue and brain fog.
Hi, Fibroguy,
The answer to your questions is that no doctor, let alone consultant, will ever admit
his/her ignorance, so they feel obliged to say anything that comes to their mind, so they can
tick off "another patient seen," and charge a lot of money (they are paid fortune by NHS) .
One honest GP told me few years ago, that there is absolutely no benefit in doing exercise, of
any kind, to help fibro pain, but instead it can bring a bad flare up. This has certainly been my
experience, too. Sadly she has recently retired, so no more common sense advice. Do what
feels right for your body, do not force anything. I do some stretching when the timing is right,
and it is helpful to me, easies off some stiffness. but you do what is right for you.
Listen to your body, Fibroguy
Arnika
"When You Know Better, You Do Better!" 
What do you tell people when they ask what is fibro?
